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Topic: I'm new (Read 723 times) |
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Raija
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Hi everyone!
I'm new and wanted to introduse myself. I'm a 28 year old woman from Norway, that has just been diagnosed with cluster. I have had headaches for 2 years, but they have changed over time. I also have trigeminal neuralgia after an accident, so it van't be operated on, and I have lupus. I'm new to all this cluster stuff, so I'm looking foreward to meeting others that know what I go through. I use sumatriptan injections and oxygen, and are in a period with clusters now.
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George_J
CH.com Alumnus
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White-Breasted Nuthatch
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Re: I'm new
« Reply #1 on: Feb 22nd, 2008, 9:09am » |
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Welcome, Raija.
It sounds as if you're getting some appropriate treatment for cluster headache thusfar, and I'm hopeful that the sumatriptan and oxygen have been of some help.
I'm certain that others with more knowledge and personal experience will be along to discuss preventive medications with you--oxygen and sumatriptan are both abortives.
Are you taking prednisone for your lupus? My mother has lupus, and has taken low-dose quantities for extended periods of time. Many people here have reported success in treating CH with higher-dose prednisone tapers--although the CH tends to return when the taper is finished. Most of the time, prednisone for CH is used in conjunction with a preventive like verapamil (for example) which ought to become effective by the time the prednisone taper wears off.
Best wishes,
George
(edited for grammar.)
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| « Last Edit: Feb 22nd, 2008, 9:11am by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Bob_Johnson
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Re: I'm new
« Reply #2 on: Feb 22nd, 2008, 9:45am » |
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Welcome!, "near landsman". (My tribe comes from the E coast of Sweden.)
You'll find the burden of this site is that people will offer so much help/information/support that it will become overwhelming! <bg>
I'd suggest that you start to learn about CH in an organized manner, otherwise many very specific suggestions will be difficult to evaluate, much less use. Suggest either of these books:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Next, explore the buttons on the left of this page. They have many embedded links to explore with the OUCH site being deep and organized.
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If you wish to learn about specific medications, print both of these articles and you may wish to share them with your doctor. They are fine guides open the door to a discussion of your options.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
Enough to get you started!
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Bob Johnson
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Raija
New Board Newbie
I love YaBB 1G - SP1!
Posts: 6
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Re: I'm new
« Reply #3 on: Feb 22nd, 2008, 11:59am » |
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Thank you both so much. I have been on prednisone, but it doesn't work well for me. I have started taking topiramate or topimax (that's the Norwegian name), and hope that will help in the long run. They woun't try me on verapamil, don't know why though  .
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: I'm new
« Reply #4 on: Feb 22nd, 2008, 1:02pm » |
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Warm welcome to Clusterville, Raija! 
I'm so sorry that you have ch on the top of everything else, but I'm glad that you've found us. It's always a pleasure to see another Scandinavian join our international ch family.
You will find lots of information about ch right here, including lots of people have used topomax before (including myself; didn't work with me). And here's always people who know what you're going through, so don't hesitate to ask, vent, whatever you need.
Lots of PF (pain free) days your way,
Sanna
27, from Finland
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| « Last Edit: Feb 22nd, 2008, 1:02pm by sandie99 » |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Stinger
New Board Junior
I love YaBB 1G - SP1!
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Re: I'm new
« Reply #5 on: Feb 22nd, 2008, 1:34pm » |
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Don't give up on the prednisone, though. I have had cycles where it has helped and others where it doesn't. You just never know. I have been really lucky this cycle with the help of Red Bull and Melatonin. They seem to help a lot. Welcome and I hope you do well.
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Charlie
CH.com Alumnus
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Happy to be here
    
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Re: I'm new
« Reply #6 on: Feb 22nd, 2008, 11:11pm » |
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Welcome to our strange little world. Like Bob, my tribe came from Sweden as well.
I haven't had a hit in alomost 17 years but they I never forget. I had some success with Inderal but mostly I used this technique to make things easier for me. It worked!
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie (Good luck!)
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Raija
New Board Newbie
I love YaBB 1G - SP1!
Posts: 6
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Re: I'm new
« Reply #7 on: Feb 23rd, 2008, 1:14pm » |
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Thanks to all of you. I have tried that Charlie, the thing with the hands, hand it helps but if the pain is too severe it's hard to concentrate enough.
I use prednisone now and then for my lupus, and i swell up a lot, and it doesn't do much. But I'm sure I'll try it again. Hope topamax helps, or I'll have to try something else.
I have a headache all the time, I never have painfree periods, but the cluster I believe, is a different matter, but I don't know. Maybe the headache I have had has just been the build up to the cluster? Who knows??
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RichardN
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Re: I'm new
« Reply #8 on: Feb 26th, 2008, 1:29am » |
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Hi Raija
I will assume you are using the 02 at 12-15 lpm? Just checking because so many have their original prescriptions written for much lower (and much less effective) flow rates.
Very glad you found us . . . . it's amazing how much talking with folks who truly understand the pain and frustration of CH helps us deal with our beast. I was SO alone with this things til' my wife found this site for me (2/02), got a name-for-the-pain and the info and support to get my life back.
Stick arround . . . you just got a new home. And check your PMs (upper right hand corner).
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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